Multiple System Atrophy (MSA): How to discuss with family?

Welcome, @ripley77. I moved this introduction post from you into its own discussion. I think it is a good topic for discussion with fellow members when diagnosed with Parkinson's or Multiple System Atrophy and how to talk with family. I'm tagging members like @hopeful33250, @lyndsm @omaralhmoud @karinneke6 @popo1 @mollymae18 and others.

Ripley, from your message, I understand you've recently been diagnosed with MSA-C (Cerebellar Type) vs. MSA-P (Parkinsonian Type). It can be so hard to get the conversation started with your children. I bet they have many questions and might be too afraid to ask. You might not have all the answers.

So where do you start? I look forward to hearing suggestions from others.

In the meantime, I might add my 2 cents. What about starting with something like..."I am finding it hard to find words to talk about my diagnosis. I'm not sure where to begin, but want you to know I love you. Do you have any questions or fears?"

What an excellent suggestion! I have told the family of my diagnosis MSA C & P. Yes there have been many questions. When I didn't know the answers, I message my dr, and she gives me the answers I need. But it's the next step that I face the unknown. Their accepting my MSA and not becoming paralyzed with it. As an example: Already my middle son thinks he needs to relocate from the San Fransisco Bay Area to Southern CA in the San Diego area. He has a daughter that is with him 50% of the time. I don't want him to leave her because of me. I do not know how I can deal with the aftermath of the initial conversation I had with them. I also feel bad about giving them such bad news. How do others handle this situation?

Hello (@ripley77) Dyanne,

You are asking some very important and thoughtful questions. I am glad to know that you have already begun the conversation with your family about your diagnosis. It shows a lot of courage as you face this challenging time in your life.

You need to be aware that once you provide your family with your situation, you must allow them to make the decisions that they are most comfortable with. You will undoubtedly need support in the years to come, and it is important that you allow others to help you. Also, as adults, they need to be free to make their own decisions. I understand that you would like to control the aftermath of this discussion, but generally that is not in our power. As you have you have presented your situation to your children, you now need to allow them to act upon the information in a way that they are most comfortable.

Now, regarding your middle son. I assume that his desire to move is so that he can be closer to you and offer you any help that you need. As you are concerned about his moving away from his daughter, why not ask him how he will arrange to see his daughter after this move. This will help to continue the conversation and also show your concern and your care for his welfare and that of his daughter's.

Will you continue to post and let me know how you and your family are doing?

Yes I will keep the group up to date with the conversations as they occur going forward.

Your advice makes a lot of sense. I have never interfered with their plans and lifestyle before, so why should I start now? It's always been my nature to want to protect my children. This going to be a challenge for me that I must not fail at. Thank you!

I certainly admire your desire to protect your children, @ripley77, and I appreciate that you recognize that allowing them to journey with you at their own discretion will be a challenge for you. You are obviously a very courageous, caring and competent woman and I'm sure you are on the right path!

I look forward to hearing from you again.